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Expressing Medical and Physical Needs

Being an advocate for your own health care is an important part of becoming a responsible person. Here are some ways you can encourage your child to express his or her needs:

  • Let your child know that it's ok to speak up if he or she has pain or a bleed.
    • Assure your child that his or her teachers, coaches, and other adults are there for help and support.
    • Children with bleeding disorders should be aware that they have certain accommodations with their school, which allows them free access to the restroom and school nurse.
  • One way to help your child gain the confidence to speak up is to role-play using different situations.
    • For example, make a game out of quizzing your child on important phone numbers to use in case of an emergency.
  • Tell your child that there are health care laws. As your son or daughter starts to take on more responsibility and interest, you can educate him or her on these laws, including:
    • The 504 Accommodation Plan at school.
    • The Health Insurance Portability and Accountability Act (HIPAA). HIPAA gives patients control over the use of their health information and regulates the sharing of personal health information.
  • Help your child to understand when he or she needs to go to the emergency room (ER).
    • Remember: always call your Hemophilia Treatment Center (HTC) so they can notify medical personnel to let them know you are heading to the ER.
    • Your child should also know how to get in touch with the HTC in the event that you are not with your child when he or she needs to go to the ER.
    • Insist that ER staff contact your HTC if they have questions about your child's treatment plan.
  • The early adolescent years are a good time to encourage your child to talk to his or her medical team.
    • Before a doctor's visit, have your child prepare one or two questions to ask so that he/she gets used to talking to the doctor without a parent present.
    • After the visit, have your child write his or her impressions in a journal. Your child can include any questions he or she would like to ask at the next visit.
    • Have your son or daughter refer to this journal before and after every doctor's visit to maintain communication with the health care team.